Saved From Senility

What If A Diagnosis Is Wrong?

2004Oct 04

CorrespondentRebecca Leung

Facebook

Twitter

Reddit

Flipboard

For many people, it's the worst possible news. They're diagnosed with Alzheimer's or Parkinson's, and they're told to put their affairs in order and prepare for years of suffering, and eventually, death.

Millions of Americans have to live with that diagnosis -- and all the heartache that goes with it. But what if the diagnosis is wrong? What if they're suffering from something that's treatable? Correspondent Vicki Mabrey reports.

"I was totally convinced I was dying. I was totally convinced I'd be gone in a month or a so," says Bob Fowler, who wrote his own obituary five years ago, at the age of 69.

"It was hard to write it. I was totally convinced because I'd been to doctor after doctor after doctor with absolutely no positive results. No diagnosis of what was wrong with me at all. It was a very traumatic time for us."

For nearly a decade, Fowler had struggled with debilitating symptoms – trouble with balance, memory, and incontinence. Doctors suspected Parkinson's or Alzheimer's, but weren't sure. His condition worsened so terribly that he ended up in a wheelchair and had to stop working. Eventually, his wife Bonita began making plans to put him in a nursing home.

Fowler says he also developed a severe case of dementia: "One morning, I wandered out to the sidewalk to get our morning paper. And Bonita was at the door and she yelled at me. She said, 'Why don't you have anything on?' I said, 'Well, I've got a towel.' I had a towel around my neck and nothing else on. Now, I've always been a shy, kind of private person. And yet, it just didn't seem to matter."

He says he's probably been to 15 doctors over the past nine years. And in all of those years, none of his doctors suggested he have an MRI or CT scan, and he never got a definitive diagnosis of what was wrong with him.

In Phoenix, retired dentist Milt Newman suffered for 15 years from the same symptoms as Fowler. In Newman's case, a CT scan was performed, yet none of his doctors could pinpoint what was causing his decline.

"My concentration was nil. There wasn't any. Reading a book was difficult because I couldn't remember what happened 10 pages back," says Newman. "And later on, conversation was difficult because I'd forget what people would say."

He says it started when he was 55. His wife, Phyllis, says she remembers watching her once vibrant husband simply slip away: "It was like his brain was sinking into his body. That's the only way I could say."

Eventually, he was diagnosed with Alzheimer's. "I was floored by that because to me that was a death sentence," says Newman. "I said to myself,'Well, let me get prepared.'"

What Newman wasn't prepared for, however, was the news that it was all a mistake – and that there was hope.

Last year, after 15 years of suffering, Newman met Dr. Harold Rekate, a neurosurgeon at the Barrow Neurological Institute in Phoenix. He realized that what Newman had wasn't Alzheimer's but a condition called normal pressure hydrocephalus or NPH. NPH is caused by excess fluid putting pressure on the brain.

"There's 10 times too much fluid in here than there is in a normal person," says Rekate. "It's pushing the brain outward and stretching the nerve fibers so they can't function properly."

The result can be the very symptoms that plagued both Newman and Fowler – problems with gait, or walking, with thinking and bladder control.

To Dr. Rekate, those symptoms – especially a shuffling walk – are a giveaway. But doctors rarely realize that the cause might be NPH and a surprising number of cases go undiagnosed, and untreated.

Alzheimer's and other forms of dementia afflict more than 7 million people in the United States, but medical professionals estimate that between 5 and 10 percent of them -- at least 375,000 people -- might actually have NPH. And most physicians are missing it. Why?

"It's hard to make the diagnosis. You have to sit down and you have to listen and you have to examine the patient. And you have to do it in a thorough way. And then you have to order an expensive test," says Rekate. "An MRI scan will cost somewhere around $2,000-3,000. It's not that the insurance carriers want you to do that."

So what do those who are misdiagnosed need to do? "You don't have to go gently into that good night," says Rekate. "You need to fight. And we need to give you the tools to fight."

The first tool is knowledge, because once the condition is discovered, the treatment is a 45-minute procedure in which neurosurgeons surgically insert a tube called a shunt into the brain. That tube drains the excess fluid from the brain and moves it to the belly where it can be absorbed.

The shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now it is done painlessly with a magnet in the doctor's office.

After the surgery, Newman said he "felt like the old Milton."

Fowler said he had a similar transformation in 1999, when he was finally told that he had NPH: "I never anticipated feeling that good again in my life. And all of a sudden I felt fantastic. I'm 74 years old now and I'm doing things that I would have dreamed of doing any time during my 60s."

Today, five years after his surgery, Fowler is back at work and back at play. But he's also a man with a mission to spread the word about NPH.

He's starred in a public-service announcement, re-enacting what his symptoms were like then, and showing how he is now. The ad was produced by one of the shunt manufacturers.

"We've had hundreds of calls from patients who saw those commercials and said, 'That sounds like me. It sounds like my mother, my father, someone that I know,'" says Dr. Gail Rosseau, a neurosurgeon at the Chicago Institute Of Neurosurgery and Neuroresearch.

Rosseau is working to raise awareness in both doctors and patients about the three classic signs of the condition.

"Patients and their families should know that if someone is aging and their gait is worsening, their mental thought processes are becoming less clear, and they have urinary incontinence, they need a scan," says Rosseau. "They need to insist on a scan and they need to see a specialist who knows about normal-pressure hydrocephalus."

But even that, she says, might not lead to a dramatic recovery.

"We can improve the symptoms of normal-pressure hydrocephalus, but we can't make you look younger," says Rosseau. "We can't slow down the other things that make you feel old that have happened during that same period: arthritis, perhaps heart disease, the other medical problems that we all seem to accumulate as we get older. This only helps one of them, but when we're right about it, it can help a lot."

No one understands that more than Fowler, who says he feels like he's been given a second chance, and he wants to share it with others.

"I can spot 'em quickly. I've even walked up to people and had the audacity to walk up to a person and say, 'Have you had an MRI or a CT scan in the last few years?' And they say, 'No why, what business is it of yours,'" says Fowler.

"And I say, 'Because I know your gait and I know your walk. I want you to go from here and have a CT scan or an MRI. Do yourself a favor.'"